Still trying to decide on Mayo - I feel too sick to get well

Posted by backyarder1 @backyarder1, Mar 25, 2019

I am UN-well enough that I really don't have a normal life and no local doctors can find answers for me. I have a lot of fatigue and weakness and my brain just feels like it is full of cotton or something – I can't think clearly. I have various pains in my body, but none severe. Mainly it is just weakness and fatigue and not being able to think. Doctors have tried various blood tests and some CT scans, etc. but since they don't have any idea what they are looking for, they don't seem to be finding it. I know that I have various virus antibodies in my body such as EBV, CMV, HSV and possibly lyme disease (depending on what doctor you talk to). My latest pain, which I have told several doctors, is that it feels like I was kicked in between the legs. Of course, a lot of my "holistic" friends have suggestions like Lyme disease or Mold toxicity or overall candida but traditional doctors don't seem to want to listen to those ideas.

One of my additional problems is that I am so weak, or maybe its just because my body is so sensitive, I can't tolerate most medicines and I can't really drive very far.

If I go to Mayo, do they do a test and then just send you back to your hotel to recover? I don't have anyone to go with me for tests so first of all, I need to get transportation. But I also feel like I need to be in a supervised setting for recovery, etc. Which means I will probably have to hire a nurse or some sort of caregiver to go with me. I'm only 63.

I Sooooo wish i didn't have to make the drive and go through the additional stress of having to travel to get well. But if I'm NEVER going to get well, I need to make arrangements for my future. I need to hire caregivers, etc. So I need some answers.

Anyway, I'm at a loss. I want to talk to my doctor one more time but I really don't think she believes that there is really anything wrong with me.

Liked by EES1

I hope someone who can help reads this. I’m just sending hugs. I do hope you get some answers!

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Hi @backyarder1, my name is Lawrence and I am one of the Concierge at mayo Clinic. If you come as an outpatient you will do your tests then go back to your hotel to rest. Rochester, has several lodging options available that I can email to you depending on your needs, and if you have no companion there are several home health agencies that offer companion services for hire. Otherwise, most hotels provide transportation to and from Mayo Clinic and once you reach our clinic you can ask for an escort to help you get from one appointment to another. The escorts are all Mayo Clinic employees so the service is free to patients who need the service during appointments. You can contact Concierge services at 507-538-8438 or email concierge@mayo.edu

best of luck and I hope you get the medical attention you need soon.

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Thanks. I live in Florida, not NY.

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@backyarder1

Thanks. I live in Florida, not NY.

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Mayo Clinic also has a facility in Jacksonville, Florida and Phoenix, Arizona

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@backyarder1, I want to share a discussion with you. You are not alone with your concern about traveling alone.
Chronically Ill: Travelling by myself to Mayo Clinic FL first time
https://connect.mayoclinic.org/discussion/chronically-ill-travel-by-myself-to-the-mayo-clinic-for-the-1st-time/

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@rosemarya

@backyarder1, I want to share a discussion with you. You are not alone with your concern about traveling alone.
Chronically Ill: Travelling by myself to Mayo Clinic FL first time
https://connect.mayoclinic.org/discussion/chronically-ill-travel-by-myself-to-the-mayo-clinic-for-the-1st-time/

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Thanks. It would be more helpful for me to hear from the woman who originally shared that post. I asked in a Chronic Illness group and many people said they didn't really find answers at Mayo so it may not be the best choice for me.

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@backyarder1

Thanks. It would be more helpful for me to hear from the woman who originally shared that post. I asked in a Chronic Illness group and many people said they didn't really find answers at Mayo so it may not be the best choice for me.

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@backyarder1
I understand. Here is my suggestion: You can post your question in that discussion. If you want to address it to a particular member, just include that person's @name (just like I did at beginning of this message to you) and they will receive an email notification informing them of the message.

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@rosemarya

@backyarder1
I understand. Here is my suggestion: You can post your question in that discussion. If you want to address it to a particular member, just include that person's @name (just like I did at beginning of this message to you) and they will receive an email notification informing them of the message.

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Thanks. I tried sending a message directly to her so I'll see if she responds.

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@backyarder1

Thanks. I live in Florida, not NY.

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@backyarder1

I have gone to the Mayo Clinic in Jacksonville. There is an adjoining hotel to the hospital and one across from the hospital. I have not stayed at either. I have support of my husband who is retired military and we stay at a cabin at the Mayport Naval Station's rv park or sometimes take our rv down. They do have people to help you get around the hospital if needed.

In your phone call to make an appointment they will ask you many questions in order to get you with the correct doctor/s. You may have to send them test results or cds (like of ct and mri scans or x-rays) of test you have had.

Best wishes,
Zaroga

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@backyarder1

Thanks. I tried sending a message directly to her so I'll see if she responds.

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@backyarder1, I want to drop in this morning, and ask how you are doing. I've been thinking about your current situation.
Have you made an appointment to followup with your current doctor? Have you brought up your interest in a possible drive/appointment with her? Does she have any concerns about you making the trip alone?

Enough questions from me! Here is what I want to share with you.
-I found an appointment Q&A and I thought of you when I saw it.
Appointments FAQ – https://www.mayoclinic.org/appointments/faq
-You can also check this link the Visitor's Center, where you can see some information specific to Jacksonville campus, as well as contact information. https://mayocl.in/2ukD18r

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backyarder1
I too have similar issues. Doctors think I’m crazy when I tell them what’s happening with me since I moved 7 months ago. I know there’s mold. I can’t afford to move. I have Trigeminal Nueralgia, 6 years now. Doctors and family tell me since my cranial nerves are compressed it’s compromising my thoughts. I’m not the crazy one but if they lived through this they’d tell a different story. I love to research.
It’s taken me 6-7 hours each day till I finally came across something today. There’s nothing it don’t talk about that I don’t suffer. Explains every detail of what’s wrong. I’ve literally wished I were just crazy. If I knew I was crazy I’d feel better. At least I’d have a answer. To say the least I’m glad I’m not crazy now because I finally found the answer.
I don’t know if I’m allowed to insert the link to the findings.
whatmoldtoxicityfeelslike Look this up online. I hope it takes you to that article. If not is there another way to contact you?

Thank you Page admin for the prompt message letting me know I couldn’t post a link.

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Hi Lillybet. Did you get some of those answers from the Mayo clinic or just on your own? Are you going to go to Mayo?

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@lillybet

backyarder1
I too have similar issues. Doctors think I’m crazy when I tell them what’s happening with me since I moved 7 months ago. I know there’s mold. I can’t afford to move. I have Trigeminal Nueralgia, 6 years now. Doctors and family tell me since my cranial nerves are compressed it’s compromising my thoughts. I’m not the crazy one but if they lived through this they’d tell a different story. I love to research.
It’s taken me 6-7 hours each day till I finally came across something today. There’s nothing it don’t talk about that I don’t suffer. Explains every detail of what’s wrong. I’ve literally wished I were just crazy. If I knew I was crazy I’d feel better. At least I’d have a answer. To say the least I’m glad I’m not crazy now because I finally found the answer.
I don’t know if I’m allowed to insert the link to the findings.
whatmoldtoxicityfeelslike Look this up online. I hope it takes you to that article. If not is there another way to contact you?

Thank you Page admin for the prompt message letting me know I couldn’t post a link.

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Hi @lillybet welcome to Mayo Clinic Connect. I see that you wanted to post a link to your post above. New members are not able to post web links for a few days. We do this to protect the community from spammers, i.e., people who join only to post links to sell something, etc. Clearly the link you wished to share is not spam. Please allow me to post the link for you.

– What Mold Toxicity feels like, from symptoms to shame. https://pjharlowwellness.com/blog/whatmoldtoxicityfeelslike

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@colleenyoung

Hi @lillybet welcome to Mayo Clinic Connect. I see that you wanted to post a link to your post above. New members are not able to post web links for a few days. We do this to protect the community from spammers, i.e., people who join only to post links to sell something, etc. Clearly the link you wished to share is not spam. Please allow me to post the link for you.

– What Mold Toxicity feels like, from symptoms to shame. https://pjharlowwellness.com/blog/whatmoldtoxicityfeelslike

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@lillybet @backyarder1 I see a doctor who is a functional medical physician, or environmental medicine specialty. He told me that the doctor who pioneered this field of medicine started this practice in Dallas, and the practice continues even though he has passed. They do sell some medical volumes for physicians. You might be able to find information here. https://www.ehcd.com/ They do treat mold toxicity and immune problems from surgical implants.

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@backyarder1

Hi Lillybet. Did you get some of those answers from the Mayo clinic or just on your own? Are you going to go to Mayo?

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On my own. I realized years ago we have to be our own advocate. I’m not suggesting all doctors, it just seems ones I’ve been to think I’m cray and hand me the bill.
I had problems finding answers knowing I know how to research. I got so frustrated due to finding the same things just worded differently till the other day. I clicked on a link out of nowhere. When I read the ladies story and continued to follow her blog I was happier at that moment but also cried.

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